Child uses epilepsy to educate others

CHARLESTON, S.C. - “Hi, my name is Evelyn Hill. I am 7 years old and have epilepsy. I take special medicine to help me not have seizures anymore. Did you know that more than 50 million people in the world have epilepsy?”

This was the beginning of a speech Evelyn gave over the intercom system at Hunley Park Elementary School, Charleston, S.C., to all the students Nov. 12, 2013, in recognition of Epilepsy Awareness Month.

Epilepsy is a brain disorder in which a person often has repeated seizures or convulsions. Seizures are episodes of disturbed brain activity that causes changes in attention or behavior. Epileptic seizures usually begin between ages 5 and 20, but can happen at any time.

“We had been out at the park for a couple of hours; she came inside and asked for water,” said Jessica. “The time it took for me to walk to my refrigerator and back … she was on the ground. It started off as small convulsions which turned into massive convulsions and progressed into a grand mal seizure.”

Evelyn’s life-threatening grand mal seizure lasted a grueling 28 minutes and 36 seconds resulting in her losing consciousness for an almost three hours, during which Evelyn’s heart stopped for a total of 18 excruciating seconds.

When Evelyn regained consciousness, she had no idea who anybody was and it took her about an hour and a half to even be able to talk. Evelyn was only 4 at the time.

“When her heart stopped, I was cradling her in my arms,” said Jessica. “I was in the mind set of I’ve got to keep her going. I had it as a child so I kind of knew what to do. I cleared her airway and made sure there was nothing in her mouth. I basically had to pick her up and lay backwards to put her on her side because she was thrashing so violently.”

Jessica’s epilepsy started about the time she was 3 years old and dissipated at about age 8, but Evelyn’s doctor doesn’t foresee her being as lucky.

“Only 42 days later Eve had her second grand mal seizure,” said Jessica. “And 10 days later she had her third.”

Evelyn suffers from what is called a series of seizures. First they start off in her sleep; they are so subtle, a person wouldn’t even notice them unless they knew what they were looking for. Then she has partial focal seizures which are basically starring spells where she blanks out.

“They last anywhere from a few seconds to a couple of minutes; most of the time she doesn’t remember anything,” said Jessica. “Eventually she will progress into the grand mal seizures.”

The type of seizure depends on the part of the brain affected and the cause of the epilepsy.

While playing with dolls on the couch next to her mom, Evelyn started to explain what a seizure means to her.

“Seizures can be very dangerous,” said Evelyn. “The doctors say the two sides of my brain get angry at each other and they start to fight.”

Epilepsy occurs when permanent changes in brain tissue causes the brain to become too excitable or jumpy. The brain sends out abnormal signals which results in repeated, unpredictable seizures.

Sixty-six percent of those diagnosed with this disorder have no known causes. Unfortunately Evelyn falls within that percentile.

“Evelyn hasn’t had a grand mal seizure in more than two years,” said Jessica. “The doctors have been able to get her regulated with medications so that she doesn’t go that far.”

Every time Evelyn hits a growth spurt, she also outgrows her medicine, leaving her more susceptible to grand mal seizures.

“She’ll probably have to adjust again in the next six months,” said Jessica. “This is something we will deal with until she is done growing.”

Evelyn’s doctor has come up with an action plan for her teachers so Evelyn can keep up with her studies while also monitoring for seizures.

“My role in the action plan is to meet with each one of my daughter’s teachers and go over what are common signs of seizures,” said Jessica. “They also let me know if she is getting behind in any subject, so I can help her catch up at night.”

At times, Evelyn will remember parts of a lesson plan, but after coming out of a staring spell, she is often completely lost for the rest of that lesson since she missed several steps.

“I remember starting a lesson, but just don’t remember the rest of it,” said Evelyn.

As Evelyn has gotten older, she has started to talk about her epilepsy more with others. Evelyn even invited Karen St. Marie, the founder and director of SAFE, South Carolina advocates for epilepsy and a Medical University of South Carolina physician to a Girl Scout meeting so the three of them could teach the other children what epilepsy is and to bring more awareness.

While Evelyn is educating others she also has a lot of support from her teachers, classmates, doctors and her parents.

Almost the entire school staff and more than 50 percent of the school wore purple Nov. 15, in honor of epilepsy awareness.

“I turned the whole school purple,” said Evelyn. “I think it’s awesome to have epilepsy. It makes me special!”